All about Xeloda

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  • marylou48
    marylou48 Member Posts: 2
    edited June 2013

    Hi Lynn,

    I am also on Xeloda , but one week on and one week off. Don't think I could tolerate a 2 on/1 off protocol. Hope you are doing better by now and have good scans.

    Hugs, Mary

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  • marylou48
    marylou48 Member Posts: 2
    edited June 2013

    Hi Lynn,

    I am also on Xeloda, one week on and one week off. Maybe you could ask your onc about this. Don't think I could tolerate a 2 on/1 off protocol. Hope you are doing better by now and have good scans.

    Hugs, Mary

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  • braids3
    braids3 Member Posts: 173
    edited June 2013

    good evening ladies i'm currently doing rads while on x was told it would increase se and yep it has i have the brown spots in diffrent places my hand and foot is worst then ever i staqted haenna today it works real good for me and really feels good i keepit in the fridge my worst newest se is like i get soda bulles stuck in my throat any one else have this it hurts!also i side thing thats helping hs is i got silvadene for the rad burns the i just rub on hand and feetafter the boob if it gets real bad ask. i've been on t for a year now only prgession is to the brain which it is keeping lower?

    love light and blessings chris

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  • Kazzie61
    Kazzie61 Member Posts: 452
    edited June 2013

    RangerMom......I just wanted to share my story with you.

    I am on my 6th round of Xeloda, 14/7 & 2000 am, 1500 pm.

    I was scanned after round 3 & it showed progression. Like your onc, mine said try 2 more rounds & we will re scan......& guess what? There was stable bone mets with shrinkage of one of the liver mets.....I have never had a scan that didn't show progression before so i'm pretty happy :) Go back after 2 more rounds.

    I too have not had a chemo that worked before this, so please don't give up as there is hope!!

    Just wanted to share.......



    Karen xox

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  • OBXK
    OBXK Member Posts: 791
    edited June 2013

    I go for my monthly MO appt.tomorrow. I hope my labs are good. This has been such an easy drug for me, I don't think I could go back to the IV bags from hell. I have a very difficult port.

    Wish me luck! Next up 3 month scans.

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  • Kazzie61
    Kazzie61 Member Posts: 452
    edited June 2013

    Good luck tomorrow Karen (((hugs)))

    Anyone else who's triple neg & on X suffering from awful hot flashes?

    I'm round 6 of X & they are gradually getting worse......starting to drive me nuts along with the constant runny nose!! Still better than infusions though :)

    Would be interested to hear if anyone else is experiencing this....



    Karen xox

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  • RangerMom
    RangerMom Member Posts: 604
    edited June 2013

    Thanks Karen for sharing - its good to hear you have regression after so many dissapointments - I'll keep the hope light burning. I see my regular onc on the 27th so I assume scans will follow soon after that. I'll post when I get results. 

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  • OBXK
    OBXK Member Posts: 791
    edited June 2013

    My freaking tumor markers are on the rise and I have to wait for three weeks to get my scan. We all know how long that is - dog years!

    Oh well, I did three months of carbo/gemzar , only to have it progress. At least this one is easy for me. I am going to see "Wait, Wait, Don't Tell Me" live in Chicago next month. So at least I have something to look forward to! I go on the 10th and will have my results on the 3rd. I hope it's not a buzz kill. I'm triple negative. I don't even know what I would have next. Another TN metster is in a trial at UNC. I sent the info to my MO.

    In the mean time... life goes on. My eldest son graduates from HS on the 14th. I am happy that I'm here to celebrate.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited June 2013

    Tuesday visit with onc I brought up some issues with how drugged I was feeling. So he moved me off of Celexa and back to Lexapro. Immediate improvement! TMs were identical to where they were at two weeks ago, at 102. So all the wonderful drops I have been seeing have stopped. I also told him about lower back pain and right hip pain that I have been dealing with for a couple of weeks. So he wants me scanned again. Just waiting for the appt to be set up.



    In the meantime I finally got a phone call from the trial onc office and will be seeing them next Thursday. This is the ABT-888, vinelbine and cisplatin trial. Well see what the scan says. If Xeloda is still working then I might not be ready for the trial.



    Wanted to mention that the Parp Inhibitors are an option for all the Triple Negative ladies. So these ABT-888 trials are open to trip neg along with the BRCA+ ladies. Go to the trial database search on the NCI site to find trials in your area.

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  • Kazzie61
    Kazzie61 Member Posts: 452
    edited June 2013

    Karen.....feeling for you, nothing worse than waiting! Fingers crossed your tumour markers are just messing with your head.....

    And have a BIG celebration when your son graduates :)



    Anacortegirl.....good luck with your scans, thinking of you.



    I'm on day 9 of my cycle (round 6) & have the worst stomach issues!! Spent the night on the loo....was just wind but too scared to let it out unless i was in the loo if you know what I mean...TMI!!! This morning my stomach sounds like a washing machine & feels quite bloated.... Oh well, no point whinging, just get on with it.... The side effects are so unpredictable but not that bad.



    Take care all & have a lovely weekend.



    Karen x

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  • Kazzie61
    Kazzie61 Member Posts: 452
    edited June 2013

    How is everyone's hair going on Xeloda?

    Mine is growing into awful nana curls.....still wearing scarves & wigs after 4 months!!

    Last time I lost it, it grew back quite straight but very fine.....think I would prefer that as I just done know what to do with the curls!!

    Take care all.



    Karen xoxox

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  • saskie
    saskie Member Posts: 205
    edited June 2013

    Anacortes - I too use Raberprazole (Periot)  Have used that for pretty well the 11 month that I have been on the Xeloda.

    Like SophieJean I definitely have stomach issues if I don't use it and really have to watch what I eat.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited June 2013

    I gave the onc the information on the interactions between Celexa and Prilosec. And we also discussed the drugged/sleepy issues I was having. So he changed me back from Celexa to Lexapro and it has been wonderful. The drugged feeling is gone. I'm back to using Temazepam to help get me to sleep and stay asleep. My energy level during the day is much, much better. I had thought it was all due to Xeloda fatigue but turns out a significant amount was due to the Celexa. The whole purpose of the change was that Celexa helps with neuropathy for some ladies. I didn't see a difference so I'm glad to be back to the old meds.

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  • Deyla7641
    Deyla7641 Member Posts: 98
    edited June 2013

    Hi ladies! Just wanted to share my good news. My latest Pet scan showed NED! I did three rounds of Ixempra coupled with Xeloda after my radiation treatment. I just hope and pray that I can stay at NED for a good long while. My MO wants me to continue both chemos for now. Whatever it takes right ladies!



    Deyla

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  • Latte
    Latte Member Posts: 1,072
    edited June 2013

    Deyla, it makes the horrible chemo so worth it. Congrats!!

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited June 2013

    That is wonderful news Deyla! I hope you stay with NED for a long, long time!

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  • SyrMom
    SyrMom Member Posts: 862
    edited June 2013

    Deyla ... so very happy to hear your news!!  Thank you for sharing.  That 3 letter word we all would love to hear NED!  Fantastic.

    May I ask where your mets WERE?

    This gives me so much hope ... thank you.

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  • Kazzie61
    Kazzie61 Member Posts: 452
    edited June 2013

    That's fabulous news Deyla....:)

    I too am triple negative & would also love to know where your mets were....

    There's been a few very hopeful posts this last week or 2.....very encouraging :):)

    My latest side effect is itching all over, mainly chest & hands......driving me nuts!!



    Karen x

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  • Naniam
    Naniam Member Posts: 1,766
    edited June 2013

    Have been missing in action.  Have one more day of the reduced dose of 3500 mgs. day.  Stomach is bothering me; fatigue has been overwhelming and my legs continue to hold lots of fluid and I hate the total leg compression stockings.  See the oncologist on Thursday and am going to as her thoughts on 7/7 vs 14/7. 

    Due to the overwhelmig fatigue, I had my Vitamin D level checked. It was 17; normal is 30 and think for BC women they recommend 50 mgs.  Not sure after developing mets if 50 is even possible.  Am taking prescription Vitamin D to bring my levels up again. Question:  does your oncologist check your Vitamin D levels?  Studies have proven Vitamin D levels are important in our cancer but I had to have my PCP check my levels.  Another question for the oncologist on Thursday - why Vitamin D levels aren't checked.  My old oncologist checked. Haven't seen any questions on the board about Vitamin D levels recently.

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  • Latte
    Latte Member Posts: 1,072
    edited June 2013

    My onc doesn't check vit c but my GP does. I don't think it matters who checks it as long as someone does...

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited June 2013

    My oncologist checks for vitamin D about every 3 months.  Not all insurance companies will pay for this test, which is why I think not everyone checks it. It is an expensive test if insurance doesn't pay for it.

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  • SyrMom
    SyrMom Member Posts: 862
    edited June 2013

    Wondering if anyone has had this side effect ... on different areas of my body my skin hurts - it's real tender.  No rash, no redness or discoloration, nothing noticeable.  Very weird.

    Also noticed some of my joints are beginning to feel as if I'm on an aromasin inhibitor again - stiff.

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  • Deyla7641
    Deyla7641 Member Posts: 98
    edited June 2013

    SyrMom- I had mets to T12 on my spine which I had radiation on. My GP also checked my vitamin D and it was also 17. I am taking prescription vitamin D as well now but I haven't had it rechecked it. Its only been a month.

    The only skin tenderness I have are on my hands and feet. They have really gotten discolored and spotty and they had to reduce the Xeloda because it started to hurt to walk. I have chemo today (Ixempra) and start my sixth round of Xeloda. I see my onc tomorrow so we'll see where I go from here.



    Deyla

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  • SyrMom
    SyrMom Member Posts: 862
    edited June 2013

    Thanks for the info Deyla ... are you on the 14/7 or 7/7 schedule?

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  • Deyla7641
    Deyla7641 Member Posts: 98
    edited June 2013

    Syrmom I am on the 14/7 3000mg total.



    Deyla

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  • cthynsh
    cthynsh Member Posts: 41
    edited June 2013

    The foot pain is brutal

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  • SyrMom
    SyrMom Member Posts: 862
    edited June 2013

    Deyla, thanks for the info; I'm on 7/7 right now with goal to return to 14/7.

    Cthynsh, I'm told when the foot pain gets brutal to stop the med and call the oncology office for further instructions.  This med often has to be adjusted mult times before they find a "fit" for the pt.

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited June 2013

    I had to decrease my does of Xeloda because I got to the point where I couldnt walk.  It has been much better for the past 2 cycles.  Call you oncologist so they can adjust your medicine.

    PET scan today. Hopeful that things are at least stable.  I told my family there are 5 possible results:

    NED, dead but tumor shell still there, smaller, stable, and the one we all don't want to have progression. 4/5 are great results so I like my chances.  

    Best wishes to all of you out there

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  • Naniam
    Naniam Member Posts: 1,766
    edited June 2013

    Off to the oncologist tomorrow.  Am going to talk to her about the 7/7 regimen and see what she thinks.  I don't know if it would lessen the stomach pain by the end of the 14/7 cycle or the burning feet.  I finished my 5th round Tuesday and my stomach is still a mess - I'm on lots of prescription meds for it as it is. 

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  • OBXK
    OBXK Member Posts: 791
    edited June 2013

    Nan - I hope they can find just the right dose and schedule for you. I hope your stomach settles soon.

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